Friday, July 07, 2006

On Culture and Diversity

I meant to write about this topic several weeks ago, but my thoughts got sidetracked and I didn't get back to it until now. The main thing I'm pondering is this: Neurodiversity advocates often point to the existence of an autistic culture as a reason to respect the lives of autistic people. Conversely, those who support eugenics often claim that autism should be eradicated because it is an unfortunate impairment, rather than a culture. There seems to be an unstated assumption underlying both lines of argument, to the effect that human diversity has little or no intrinsic value in the absence of a recognized culture. And I'd like to know where we got that attitude.

This is not just an abstract or hypothetical question. Right now, wealthy supporters of eugenics are pouring large amounts of money into the development of a prenatal test for autism. They already have crude genetic tests that they are working to improve. Their goal is routine abortion of autistic babies, and they want to see it happen within the next few years.

Aspies for Freedom has asked bloggers and others who oppose eugenic abortion to take part in a protest against prenatal testing this weekend, by placing mourning banners on websites:

If we are to prevail in this fight, we need to understand how the enemy thinks. We need to analyze and deconstruct both their arguments and their unexamined assumptions.

One way of looking at the culture issue, as suggested by Estée, is that autism is intrinsically a culture because autistic people have a unique way of perceiving the world. But I don't think we're going to get very far if we try to use that argument in opposition to eugenics. People who have conditions that are currently being targeted for prenatal screening, such as Down Syndrome, also can be characterized as a minority group with a unique way of perceiving the world. That hasn't stopped doctors from routinely performing amniocentesis and giving referrals to abortion clinics.

In my opinion, there has been enough interaction among autistic people on the Internet and elsewhere so that it is reasonable to say an international culture has developed, in the more common usage of the word: a social minority group with shared experiences and values. But I don't believe that makes us any more worthy of life than if we did not have these shared experiences. When a minority culture has had many years to develop, it may indeed possess more artifacts of a common experience, and the loss of such a highly developed culture to genocide would be tragic indeed. However, it doesn't logically follow that a lack of shared custom and tradition justifies the destruction of a minority group.

Consider the diversity of wildlife in the world's rain forests and other nature preserves. If a subspecies of lemur, or frog, or parrot becomes endangered, conservationists will work tirelessly to save it from extinction. The lemur isn't expected to demonstrate that it has a culture before it is deemed worthy of life. The frog doesn't have to show that its behaviors are as productive and efficient as those of other frog species. The parrot may not have the speech abilities of other types of parrots, but it doesn't have to worry about being judged low-functioning and targeted for destruction on that basis. We take it for granted that all these creatures should be protected just because their existence adds to the diversity and complexity of our world.

There is a major controversy worldwide about genetically modified crops. Environmentalists are pointing out that we need to be very cautious about altering the genes of any species because we can't know what the long-term consequences might be. Many governments have restricted the use of genetically modified organisms in agriculture for this reason, but autism research has not been similarly restricted, even though pro-eugenics groups such as Autism Speaks have made it very plain that they intend to permanently alter the composition of the human gene pool. Why are so many people less concerned about preserving the natural genetic diversity of our own human species than they are about preserving the genetic heritage of soybeans or corn?

I had planned to write something more about the beauty and value of human diversity, but Zilari posted a wonderfully poetic essay that leaves anything I could say in the dust. Go to her site and read it, if you haven't already. (Edit: The site mentioned has been taken down. This link now goes to the Wayback Machine.)

There is a major controversy worldwide about genetically modified crops. Environmentalists are pointing out that we need to be very cautious about altering the genes of any species because we can't know what the long-term consequences might be.

This is the kind of argument that I think needs to be put forth. Moral arguments need to be made as well, but most people will go "well, you have a point" and forget about it the next day. We really need to argue that this could end up hurting everyone.

This whole business of prenatal testing really really scares me. The thought of my life eventually ending is understandable.

But, to think of the possibility that shortly, no one who thinks or perceives the world the way I do will ever exist again, is just indescribably, eerily, unsettling; and very very lonely. To be completely wiped off the face of the earth, annhilated, it's just mind-bogglingly depressing.

That's what bothers me most about it, not whether or not we have a culture. Maybe if people just thought about it that way, they'd understand our qualms with eliminating autistics from the future.

I honestly don't get why more people don't realize that if we (humans) actually go through with a diversity-reduction program, we're going to be destroying ourselves and other species in the process.

Genocide is horrendously irrational, bad for diversity, and bad for the morale of all life, everywhere. It feels ridiculous to even have to type this out -- but lately I've had a bit more of a sense of urgency about this sort of thing.

My sense of urgency comes from reading things about more recent attempts to define "personhood", from which autistics are specifically excluded.

If the people saying these things were evil or malicious it might actually be easier -- but they honestly think that they are simply ridding the world of disease and suffering.

This is the main issue I see when attempting to "deconstruct arguments and unexamined assumptions" -- basically, people react with surprise when I suggest that autism is not any more of a "limitation" than being one person, or being female, or male, or anything at all.

There are also the assumptions that (a) autistics are miserable all the time, and (b) that we'd all choose NOT to be autistic if we had the choice. I've been trying to work on pointing out the ignorance of (a) and the arrogance and intellectual laziness of (b) when I come across these assumptions.

I honestly think that most people ARE reasonably well-intentioned; the problem is that ignorance can very easily cross the borderline into dangerous and damaging policy without the ignorant even noticing the damage they are doing. The key here is pointing out the damage and thereby pushing through the ignorance.

It is a collosal and almost mind-bogglingly surreal sensation to be sitting somewhere, feeling very happy and thinking all sorts of things, and then come across a web site or news article that basically tells me to my face that I possess neither thought nor feeling. I read something like that recently and it just struck me with terrible force that this stuff is SERIOUS.

Those who understand the importance of diversity need to keep talking about it (as you are here) and emphasizing it and not letting the subject go.

This is why I spend considerable energy letting people know that I am not tragic, that we are not tragic, and that I am so incredibly and indescribably grateful to exist.

And thanks for the kind words regarding my recent blog entry. I didn't purposely try to be poetic; I just tried to tell the truth.

This was another wake up call. I too didn't know about the prenatal testing protest and will be happy to take part and spread the word a little bit.

What always worries me from talking to other parents about autism, especially those who don't have autistic children, is they see this as a parental choice thing. They think that raising an autistic child is more effort than raising a non-autistic one. In some ways that is true. I blog about our experiences and about what my autistic son is like and try to emphasise that he is a wonderful, loving boy. But he clearly needs more attention from me especially when we're out of the house. I worry that we actually give bad press to autism advocates sometimes when friends and family see us dealing with his frustration at some incident or other. They could well be thinking 'if I was pregnant and I knew the child would be as hard to look after as him, I might have an abortion to save myself the effort'.I tell everyone that he is perfect as he is, we wouldn't want him any other way. I tell them about the funny, cute things he does that stem from his autism. I want to support him and know that part of my duty is to ensure society accepts and celebrates his right to exist, and that he is not one of the final generation of neurodiverse people.

I just wanted to say also, as I am typing, Duncan is sitting on my knee (as he often does). He spotted the photo beside Amanda's comment, gave a big laugh, pointed at it and said 'Like Madagascar', meaning the children's film. He was referring to the trees in the background of the photo!

Yes. And what's really scary about it, when you think about how broad the diagnostic criteria have become and how many millions of us there are, you can be sure that the people who are spreading these ignorant stereotypes actually know several autistics in real life. It's not like they never met any of us, and a nice conversation or two would be enough to change their minds.

This is more like what happened in the Rwanda genocide, where two tribes had lived peacefully together for generations, but a concerted propaganda effort stirred up the majority group to turn viciously on their minority neighbors. Women hacked and beat to death little children in their own villages, children that they had invited into their homes to play with their own kids a few years earlier. All of a sudden, they didn't see their neighbors as human beings any more.

As much as we try to convince ourselves that we live in a modern and civilized world, the fact is, propaganda still has horrific power.

Sharon: Thanks for your comments. I'm looking forward to reading your post about the prenatal testing protest. I agree with you that the difficulty of raising autistic kids has been greatly exaggerated. Yes, they need careful watching in the early years, but like all kids, they become more responsible as they get older.

I like your argument. I am wondering, however, it it's not necessarily prenatal testing we should be targetting, but rather tolerance, education and excellent genetics counselling. Because what your dealing with is the right to choose, and based on this, choosing against prenatal testing will never win because you a re dealing with a constitutional right. I am interested to hear how others feel is the best way to deal with the issue.

Saying this, I do feel that strong campaigns like this one does raise awareness about the seriousness of the issues. If it leads to further understanding, education, tolerance and better genetics counselling, I say yes.

As I said in my recent post The Learning Curve to Acceptance, I am coming to the conclusion that we all have varying strengths in this discourse -- militant, persuasive, whatever you want to call it.

it's not necessarily prenatal testing we should be targetting, but rather tolerance, education and excellent genetics counselling.

I should clarify that no one involved with this protest wants to make prenatal testing illegal (which, as you point out, would never happen anyway). The goals of the protest are to raise public awareness of the ethical issues and to make the issue controversial enough so that donors will have second thoughts about contributing to pro-eugenics organizations that fund prenatal testing research.

As for excellent genetics counselling, is there such a thing? What I've seen is just another form of eugenics, advising prospective parents on what they can do to prevent the birth of disordered, defective, etc., children.

This is the definition on the March of Dimes website: "A genetic counselor works with a person or family that may be at risk for an inherited disease or abnormal pregnancy outcome, discussing their chances of having children who are affected."

They don't talk about acceptance of differences. The issue isn't even considered.

I wish parents could go to a genetic counselor and be told something like "Your child is likely to be hyperlexic. Such children often do very well academically, although they may have a speech delay. Here are some helpful websites you may want to visit, here's a list of recommended children's books and computer programs, and here's some information about speech therapy."

But instead, when genetic tests start being marketed, the conversation will go like this: "Based on your family history, you have a high risk of having a child with an autism spectrum disorder. Here's a list of in-vitro fertilization laboratories that do preimplantation genetic diagnosis."

I agree -- genetics counselling does nothing but frighten already uninformed parents. Is their good genetics counselling? NO.

But if it's being done right now, could it be done better? Once, I wrote a post about my experiences with a genetics counsellor and how awful it was for me. I did mention that there was no talk that quality of life does not lower because one has a differently-abled child. And yes, good idea...let's talk about what the child will be able to do and not what they can't.

You raise excellent points. Considering what exists, what is present, how can we effect change?

On the other hand, what of the parent who just shouldn't be a parent? The one who will only see the cup half empty, not half full. Who will have the inclincation to fall apart and abuse, or do worse, to a differently-abled child?

Again, it happens. There are parents who cannot handle parenting. Who will have misguided expectations no matter what kind of awareness and tolerance is mustered. We have to consider this too.

Parents who have misguided expectations can be found in many contexts, not just the differently-abled child. Some parents abuse their kids because they are girls instead of boys, because they are not athletic, because they are short, because they are overweight, etc.

Counseling for all prospective parents could help to prevent this sort of abuse. I'd say that's the direction in which we need to go; instead of genetic counseling in its present form, we should have comprehensive classes for all prospective parents that would include both general child care information and unbiased discussion of genetic variations in children's development.

Bending over backward for the benefits of "neurodiversity" is pathetic. People need to contribute in a meaningful way such that society as we known it does not collapse. Thus, the governments war against a group that of which only few of whom will be able to make any form of reasonable contribution is frankly just. I don't care how cute your autistic child is. It a matter of contribution and its disgusting that we waste so much on helping a few people in the civilized world have a half-life when must of the developing world is suffering with its potential contributors ignored.

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About

This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010